So a lot has happened since my last post. In February Paige was diagnosed with Rhabdomyosarcoma, muscle cancer. I had taken her to the doctor 6 times in a 10 day period, I knew something was wrong with her but the doctors, including Ear, nose and throat doc, wouldn't listen. The ent doctor ordered a ct of her adenoids and tonsils and totally missed the HUGE baseball sized tumor and the BONE that was disintegrated from the tumor. Instead they ordered at tonsilectamy and gave her steroids to shrink the adenoids and tonsisls, which weren't that swollen. I gave her the steroids and the next day February 11th she woke up and had a rash, so I assumed that she was allergic to the steroids. I made her an appointment with a totally differnt pediatric dr (Dr. McInturff) not knowing if I could even get in, since she was a new patient... She got in! After I had got her that appointment, the rash was almost gone. Brad told me to take her in anyways and get a second opinion on the whole tonsil thing, even though the rash had almost disapeared (which he never usually cares one way or another). I told the doc her symptoms and he asked if he could just pull up the ct scan and so he did. (We had not seen it at this point). He came back in the room about 20 minutes later and said he thought he saw something not normal, someting kinda fuzzy and he wanted to talk to the radiologist about it and he would call me later that night. Well he called me that night, he had to call the radiologist at his house to look at it and he said that he didn't like what he had seen so they wanted a sedated MRI on Monday (Valentines Day) he told me it could be a tumor, infection or growth. Made for a long weekend but we tried to not let it bother us. She was in so much pain that we just "knew". So they did a sedated mri and it confirmed it. We were sent down to primary children's first for a brain tumor, when the neurosurgeon looked at it, he referred us back to an ent doc and they did the biopsy and had to take out her adenoids to get to the tumor. They put her in for an emergency because half her face was becoming paralyzed. She was in soooo much pain and it just kept getting worse and worse! So we had doctor after doctor coming in the room telling us all this stuff and the type of tumor they thought it was. They gave us 3 different types of cancer that it could be, one of the 3 was rhabdo and that's what it turned out to be.
Paige's tumor can never be operated on, it's too risky. There are too many nerve endings where it's at including the optic nerves and it's just to close to the brain. All the radiation treatments that she received is as good as surgery. The radiation shrinks it to scar tissue.
She did really well during her radiation. We were all worried that she would have to have a feeding tube during it and that she would get terrible sores in her neck but she didn't. We are so glad! She may end up with a feeding tube later on but I am just glad to get done with the radiation.
We decided to take out her broviack central line and put in a port a cath. It would be much better for her, even though every time they need a blood draw or to access it, they have to poke her with a needle but she was having a terrible time with the other one. She was allergic to all the dressings, she was itching it non stop and she hated us to change it all the time! She wouldn't take baths because you have to put another sticky dressing (aqua guard) on top of it so it won't get wet. Her skin was just too sensitive. Anyways she aspirated after surgery when they
were taking the tubes out of her mouth and she got aspiration pneumonia. That was not fun! She is doing much better now! We are so thankful for all of our family and friends and this community!! I am thankful for my awesome friends and family and this great community that have supported and sacrificed for us!!
Paige's tumor can never be operated on, it's too risky. There are too many nerve endings where it's at including the optic nerves and it's just to close to the brain. All the radiation treatments that she received is as good as surgery. The radiation shrinks it to scar tissue.
She did really well during her radiation. We were all worried that she would have to have a feeding tube during it and that she would get terrible sores in her neck but she didn't. We are so glad! She may end up with a feeding tube later on but I am just glad to get done with the radiation.
We decided to take out her broviack central line and put in a port a cath. It would be much better for her, even though every time they need a blood draw or to access it, they have to poke her with a needle but she was having a terrible time with the other one. She was allergic to all the dressings, she was itching it non stop and she hated us to change it all the time! She wouldn't take baths because you have to put another sticky dressing (aqua guard) on top of it so it won't get wet. Her skin was just too sensitive. Anyways she aspirated after surgery when they
were taking the tubes out of her mouth and she got aspiration pneumonia. That was not fun! She is doing much better now! We are so thankful for all of our family and friends and this community!! I am thankful for my awesome friends and family and this great community that have supported and sacrificed for us!!